Archive for the ‘Arlene in the Media’ Category

Arlene On the Scene was recently named “Staff Pick” by Teaching Tolerance, an amazing organization dedicated to reducing prejudice, improving intergroup relations and supporting equitable school experiences for our nation’s children.

The Teaching Tolerance staff regularly reviews culturally aware literature and resources and selects the best picks for professional development and teachers. Arlene was reviewed in the Spring 2014 issue of the Teaching Tolerance magazine: “Filled with humor and heart, Arlene On the Scene is a great addition to any upper-elementary classroom.”

Teaching Tolerance is part of the Southern Poverty Law Center, a nonprofit civil rights organization that was founded in 1971 and has a long history of fighting racism, discrimination and exploitation. Through far-reaching legal action and fierce advocacy, the SPLC has dismantled institutional racism in the South, reformed juvenile justice practices and shattered barriers to equality for women, children and people who live with disabilities.

The SPLC has reached out to the next generation through Teaching Tolerance, its award winning program that provides educators with free classroom materials to teach students the value of tolerance and diversity. These materials have earned two Oscars, an Emmy, and more than 20 honors from the Association of Educational Publishers.

The Hereditary Neuropathy Foundation is honored to be a part of this long tradition of breaking barriers to provide access to justice and equality for all. We hope that Arlene On the Scene increases awareness of the experience of children who live with disabilities and teaches all to embrace the beautiful differences among us.

While it’s not available in stores quite yet, Arlene, the Rebel Queen is being deemed a good read by some! Children’s Literary Classics gave the sequel to Arlene On the Scene its Seal of Approval, saying it “belongs on every youngster’s reading list.” Read the full review.

We’re so pleased that they liked the book but more importantly, that they understood our point. Well, pointS. We had a lot of them. We wanted to talk to kids about change, and that making change happen can be complicated and risky. As we finish honoring Martin Luther King, swear Barak Obama in as president, and head into African-American history month, let’s be honest–change is huge. It can be frightening. But we can learn so much from looking back on changes we’ve been through, and recognizing the sacrifices made by the leaders of change.

But given that, you–yes, YOU–can be an agent of change. We all can. And should! In our homes, our schools, our communities, even the world. Rebel Queen was written to demonstrate to young readers that they have the power to make positive changes in their corner of the world. Right now!

Finally, we wanted to talk about the interpersonal relationship between Arlene and her friend Lauren. Watching our daughters weave their way through the jungle that is the tween/teen social scene, Marybeth and I wanted to dive right in to these issues–how do friendships evolve over time? How does one navigate through a waning friendship and emerge with self-confidence in tact? And what does difference and disability add to that dynamic?

Well, not to say we answered all those questions. As Mr. Goldberg says in the book, many of life’s biggest questions simply don’t have answers. Asking the question and thinking about it, that’s the point. Arlene isn’t thrilled with this idea, but she rolls with it. Which in the end is what she learns we have to do with change.

This has been a powerful school year. Arlene has proven herself to be a great discussion-starter! By exploring the book’s themes we jump start conversations about disability, the concept of embracing who you are, and the idea of appreciating, not just accepting, the differences among us. And of course, everyone we meet now knows what Charcot-Marie-Tooth disease and why we need to join together to spread CMT awareness.

We’ve hit over twenty schools this year, from Maryland to Massachusetts, the big cities of New York and Philadelphia to the small towns of southern Rhode Island. Our travels were chronicled most recently by New York Newsday!

We love seeing Arlene posing on bulletin boards everywhere. If you have an interest in a free presentation at your school next year, contact us here or email: carol @ hnf-cure.org.

Stories like this one abound, and people are beginning to take notice.

It’s not easy to live with a disease nobody’s heard of. But once word gets out there, through books like Arlene On the Scene and stories like the one in today’s New York Daily News, we begin to learn that Charcot-Marie-Tooth is just not that rare.

What is incredibly common is that people are not being properly diagnosed and treated. It happened to Marybeth Caldarone, who didn’t find out she had CMT until she was in her thirties, despite being unable to walk independently for most of her life. And it happened to Allison Moore, who was given cancer medications contraindicated for patients with CMT, despite having a known family history of CMT.

Allison was training for the New York City Marathon when treatment for an unrelated cancer triggered the onset of her CMT symptoms. Now, ten years later, Allison is training again, on a bike this time. She wears leg braces now to assist with walking, but with help from Dick Traum at Achilles International, Allison is getting ready to ride.

As Arlene says, it’s all about living it. Allison Moore: “This year it’s the Bike Tour. Who knows? Maybe next year it will be the marathon.”

Just a quick post–I was lucky enough to be able to talk about my favorite book on teachmama.com, a great blog about having fun with your kids while slipping in some enrichment at the same time. This blog is truly inspiring–wish I had it when my kids were younger!

Anyway, I was able to reminisce about Tacky the Penguin, which in so many ways really got me in the right groove to write Arlene On the Scene. Check out the post, and if you comment on the blog, you can win a free, signed copy of Arlene.

Marybeth Sidoti Caldarone, co-author of Arlene and parent of Grace on whom the book is based, was interviewed by Louise Kinross for Bloom magazine which focuses on parenting kids with disabilities.

For us, we are so thankful that in 2010 Arlene stepped onto the scene and brought much-needed awareness to Charcot-Marie-Tooth disease and the experiences of those living with it. We will continue to spread Arlene’s message throughout 2011 by visiting schools and hosting book events. We are inspired by the growing community of folks working together to change things for people living with CMT and other disabilities as well. It all starts with our own perceptions and understanding, and from there, things blossom!